When you have fibromyalgia, it’s easy to attribute every ache to the illness. So how do you know when new symptoms signal a different disease? The National Fibromyalgia Association interviewed women about navigating this mystery illness – their quests to find the right physician, and the real reasons for their pain…

“This is not normal,” the doctor said to Lynna Kay Parker. “You should not be bending over, writhing in pain in your stomach, from anything related to fibromyalgia. If you’re in that much pain, something is not right.”

For nearly seven months, Parker had been saying the same thing to her primary care physician about the spasming pain on the right side of her abdomen. She knew the nausea, the acid reflux and the severity of other symptoms she was experiencing pointed to something beyond her FM and IBS, but as she continued to hear the same message in one appointment after another —“It’s not a big deal, it’s just part of your fibromyalgia, you’re just stressed”— Parker started to wonder if she didn’t need to just “learn to deal with it,” as her doctor suggested.

“It was messing with my self-esteem,” Parker recalls. “You start to think, ‘OK, maybe I am just imagining the pain.’”

Parker’s husband, incensed that she was being treated like a hypochondriac and a drug-seeker, had long urged her to switch doctors; it was Parker’s co-workers who finally got her to take action, concerned that the 32-year-old spent much of the day hunched at the waist, hardly able to straighten up.

When Parker finally made an appointment with an internist recommended by one of her co-workers, the doctor discovered she had a severely inflamed gallbladder. The backup of sludge had gone untreated for so long, in fact, that the damaged organ had adhered itself to her colon and duodenum. That very night, Parker was admitted for emergency surgery.

Since her gallbladder was removed, Parker has lost her fear of eating — and gained a primary care physician she can trust. But what remains troubling is that her experience is not uncommon among fibromyalgia patients.

Looking beyond the FM label
It used to be the greatest challenge faced by people with fibromyalgia was ascertaining a diagnosis. With public awareness of FM having grown by leaps and bounds over recent years, that uphill struggle is almost a thing of the past.

Today’s bigger challenge can sometimes come from a blind embrace of the diagnosis; that is, fibromyalgia can become the only lens through which doctors look at patients — and patients look at themselves. When that happens, what was supposed to be the first step on the road to wellness becomes a hindrance — a label, a catch-all, a pair of blinders.

“I am a big proponent of ‘fibromyalgia plus,’” says Mark J. Pellegrino, M.D., co-author of Inside Fibromyalgia (Anadem). “And the ‘plus’ part is that other things are often present in people, not just fibromyalgia.

“I’m pleased to see the pendulum shifting, and more primary-care physicians diagnosing and treating fibromyalgia,” the Ohio physician continues. “What I’m working on now with primary care is making sure that they’re not labeling patients and forgetting that other things that happen, too. Don’t put everything under the fibromyalgia roof.”

The same myopia can affect FM patients, making them lose the sense of themselves as “normal” people; after all, having FM is not some kind of vaccine against further sickness, injury, or disease.

Coping mechanisms meant to help the FM patient push through a largely intractable illness become counterproductive when they ignore a holistic view of the patient’s body and health.

Deborah Barrett, for instance, says it can take her a couple of extra days to notice when she has the flu because she’s generally not in tune to achiness or fatigue as a symptom of anything other than fibromyalgia.

“I wake up feeling lousy every day,” she explains, “and I have to always act opposite to what common sense would tell me, or else I wouldn’t have a day.”

Momentarily failing to detect a cold or flu is not of major consequence, of course, but some years back, Barrett lived with a painful herniated disc for nine months before it was finally diagnosed. Barrett mentioned her lower back pain to her doctor when the discomfort first started, but after the initial X-ray revealed nothing, she assumed her FM was acting up. Though the pain was incapacitating at times, Barrett admits she tolerated it far longer than most people would have before insisting on a second evaluation; when the tests came back showing the herniated disc as well as spinal stenosis in her neck, Barrett says she felt “dumbfounded that there was something that had been untreated for so long.”

Ignoring new painsDana Mattern* also had a mentality of “powering through” pain and fatigue — until she experienced a wake-up call six years ago.

“You get to the point where you yourself don’t pay attention to what your body is telling you,” she says. “You’re constantly trying to disregard the pain so you can function.”

During a European excursion, Mattern tripped while walking on a cobblestone street, landing on her side. Her immediate reaction was to jump up as quickly as possible, not wanting to become a tourist attraction herself. The active 50-year-old thought nothing more of the incident, despite the daily hip and back pain that followed.

* Name changed to protect privacy.

Over the following weeks of sightseeing, Mattern’s only adjustment was applying a bag of frozen peas to her throbbing hip every night. Even as she developed a slight limp, Mattern continued to attribute the generalized soreness to her fibromyalgia.

“Yes, there was more pain my hip,” she says, “but [with fibro] you hurt all over, and you have these specific areas that bother you at times and then disappear.”

When the pain finally drove Mattern to see her rheumatologist in the U.S., the resulting MRI showed a pelvic fracture. More importantly, after her doctor ordered a bone-density test, it became clear Mattern had osteoporosis. (Osteoporosis is considered a serious disease because of the effect fragility fractures can have on life expectancy and quality of life.)

Mattern was shocked and scared — that was the last diagnosis she expected at her age. Though fortunately the issue came to light before Mattern experienced a more serious fracture, she says the episode was an eye-opener.

“It made me realize I can’t just focus on fibromyalgia,” she says. “I always put off [other health matters] because I thought they weren’t as important.”

What helped Mattern was the solid relationship she has with her health-care provider. Whereas Mattern often feels she must downplay FM for her family and friends so as not to be perceived as a “complainer,” she has — through trial and error — found a physician who accepts and understands her pain.

Because Mattern was candid with her rheumatologist about her level of pain, he was able to ask the right questions about the fall she had sustained and determine that the hip pain was something that needed to be looked at more closely.

Finding the right physicianIf, on the other hand, a patient doesn’t feel comfortable calling on her doctor when she is unsure about something that may be going on in her body, Dr. Pellegrino says the situation needs to be addressed head-on. It may well turn out that a particular doctor will not want to be involved beyond overseeing a general treatment plan, but will at least provide the name of another doctor or specialist that will be a better resource for ongoing care.

It’s better to correct a situation in which patients feel there’s an excessive amount of professional skepticism, Dr. Pellegrino adds, as that sort of attitude is detrimental to the patient-physician relationship and to patients’ ability to get timely care.

Dr. Pellegrino is right, of course. However, the constant struggle to be taken at face value can wear patients down and make them adversely self-conscious about their health-care needs — no matter that their bodies’ up and downs are beyond their control.

“You get almost afraid to call your doctor,” says Cassandra Friedman, a veteran of prolonged efforts to have hypothyroidism and what was then known as fibrositis diagnosed. “It’s like you’re always calling your doctor, and you don’t want to keep being like that, so you get to a point where you try to ride things out.

In 2006, Friedman noticed her hands felt numb for about an hour after she woke up. Over time, the numbness lasted longer and longer over the course of the day. Eventually Friedman had surgery on both hands to open up the myelin sheath around the compressed nerves. Then, just seven weeks after the second surgery, Friedman started experiencing pain, swelling and numbness in her hands. Not only that, both her heels were painful and swollen as well. Friedman couldn’t bring herself to believe that these symptoms might signal a new health issue. Instead, she told herself she had simply overdone it after surgery because she had felt so good.

So she kept quiet, waiting for the “flare-up” to die down. Two months passed, but instead of getting better, her dexterity decreased; seven of her 10 fingers started locking up.

“Finally, my husband said, ‘OK, you can’t hold anything, and now you can’t write. You have to go in [and see the doctor].”

Pinpointing the cause of Friedman’s ills was not easy. In putting together her new symptoms with a clinical history of frequent infections and elevated white blood cell counts, her rheumatologist was able to determine Friedman had seronegative inflammatory arthritis.

“If I had only gone to the doctor sooner!” she exclaims.

“I think people have to be confident about their experience,” says Margaret A. Caudill, M.D., Ph.D., M.P.H., author of Managing Pain Before It Manages You (Guilford Publications). An adjunct associate professor at Dartmouth Hitchcock Medical Center’s Pain Management Center, Dr. Caudill has 25 years’ experience researching, writing, and lecturing on the biopsychosocial approach to the treatment of chronic illnesses.

She says that on several occasions patients have been sent to her for chronic pain management, “but, in fact, if you listened to what they were saying, it was [something new], and other people kept assuming it was the same old, same old.”

The way to tap into a diagnostic line of thinking with a physician, she says, is to be very clear when providing a history. “People can’t go in and say, ‘I have a headache,’ and not say, ‘This is different.’”

“People come to me all the time and say, ‘My pain is worse,’ and I ask them ‘OK, what does that mean?’ and they say, ‘Well, I can’t stand it anymore’ … ‘Well, what does that mean?’”

Instead of spending valuable time playing “20 Questions” with your physician, Dr. Caudill suggests coming to the consultation armed with specific notes on the area of concern, pointing out that most of the time physicians make diagnoses based on clinical histories and patterns of symptoms, not machine-based tests. She suggests thinking about certain questions [see below] to help evaluate whether a sensation indicates the presence of a new illness or an FM flare.

For non-acute symptoms, (e.g., fever, chills, chest pain) which normally indicate a need for prompt medical attention, Dr. Caudill suggests keeping a diary for about a week (you can even chart pain levels at different points in the day) and bringing that along on your next clinical visit.

What should definitely not keep people with FM from having an area of concern checked out is the fear of having a second illness diagnosed, she adds. “Chronic pain is very unusual, thank God; if you get a new diagnosis, at least most of those are treatable,” she says.

What have you tried so far to make it better? (e.g., medication, rest, ice, heat)

Know Your OptionsWhen Lynna Kay Parker was having abdominal contractions so severe she was nearly at the point of passing out, she says she was sure the problem couldn’t simply be FM or IBS as her former doctor wanted her to believe. “But at the same time, I didn’t know what my options were – because you are going to a doctor and she’s got a medical degree; and she’s telling you [it’s this].”

Says patient Deborah Barrett, Ph.D., MSW, LCSW:Don’t overlook conditions that may be more serious. Don’t lose sight of the fact that not everything can be explained by fibromyalgia.
Have a really good sense of your baseline. Don’t overreact when things are a little different but don’t doubt yourself, either — you are the expert on your body.
Have a good relationship with your doctor, and don’t hesitate to make an appointment. A good doctor listens attentively, does not dismiss complaints and helps you brainstorm when appropriate.

Says patient Cassandra Friedman, Ph.D.:You want doctors who are proactive. Some years ago, Friedman switched her care from one group of doctors to another. The symptoms of what turned out to be an autoimmune problem were as puzzling to the new team as they had been to the old team; but the difference, she says, is that where one group of doctors threw up their hands and blamed fibromyalgia, the other team set about running tests and trying to pinpoint the cause.

“Nothing’s gonna change until something changes” is a phrase Friedman often uses in her clinical practice as a psychotherapist. As it applies to people with chronic pain, Friedman tells patients, “If you’re not getting the satisfaction you need from a doctor, then obviously you need to do something else.”
When you make a change, make a change to the best person available. If you need therapy, for example, don’t just go into therapy — seek a therapist who specializes in chronic pain.

Friedman had a patient with FM who developed vision problems and was having trouble swallowing. The elderly woman did not question her doctor’s assessment that it was part of her fibro. Friedman asked the woman to see a specialist; the patient went to see another doctor and was put on medication for Parkinson’s.

“You made a change — very good,” Friedman told her, “but I asked you to see a specialist.” The woman complied and was correctly diagnosed with Shy-Drager Syndrome. She came back thanking Friedman, telling her, “I was on medication that could have killed me!”

Says patient Dana Mattern:Seek a knowledgeable provider. You want to have a doctor who knows FM is real but also understands that it’s only one part of the equation; most people have related or overlapping conditions as well.
Take a holistic approach. A good doctor won’t expect one medication to affect all your pains; exercise, nutrition, improved sleep and different types of medications are also part of an effective treatment plan.
Maintain a wellness program. Don’t neglect mammograms, colonoscopies, bone-density scans, bloodwork and any age-appropriate tests.

Says patient Lynna Kay Parker:Utilize positive word of mouth. No one in Parker’s immediate circle has FM, but when she was looking to change physicians, she asked people she trusted whether they were happy with their primary care physicians. Her current doctor’s name came up three times.
Compassion can be a sign of quality. Parker says advocating for her son with autism has opened her eyes to the differences among doctors: “Yes, they are great and, yes, they can be helpful — if they care.”
Don’t stay with someone who is indifferent. A good doctor will ask questions rather than rely on assumptions.

Tips from the National Fibromyalgia Association

Support groups can be a very good source for recommendations on fibro-friendly doctors in your area.

If you are working with multiple providers, be careful that they are communicating; one provider should take the lead on your overall health.

If a rheumatologist does not want to treat you directly, ask him/her to write a treatment protocol for your primary-care physician to follow.

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